Starting on Avastin next week. Not given a lot of hope

connsteele

Well, we heard from our son's NO this morning, and the Tumor Board recommends Avastin. Apparently, they thought that additional surgery was too risky for creating more severe deficits for the little gain that might be achieved.
Also, he doesn't qualify for clinical trials because his Karnofsky score is too low. So Avastin it is. But we weren't given much hope anyway. The NO said if we did nothing, only palliative, then he might have three months. On Avastin, hopefully six months. If he has life=threatening side effects from the Avastin, then it would be stopped and we go to palliative. He was quick to add that these are just numbers, and that many go on a lot longer.

On one hand, it seems like we've given up. Truthfully, today it feels like it. I am just too tired to fight anymore. David is taking it better. He had appointment today with a chaplain at Hospice and apparently it was very helpful.

I was thinking of getting a second opinion, but where? I attended a brain tumor support group last week, and a woman there had gotten a second opinion at MD Anderson without traveling there: had her husband's records etc. faxed and got an opionion over the phone.
Problem is: we are on a tight deadline here as Dr. C wants to start David on the Avastin next week.
I asked David if he wanted a second opinion and he said no.
I guess it comes down to trusting our NO. He is highly regarded and is at a major research hospital (The James Cancer Center at Ohio State U) that is connected to NIH, so I have to think that he is tapped into the latest research and treatments and connected to other highly regarded NOs.

David wanted to know what it would be like down the road, when the Avastin stopped working. Dr. C was very gently and empathetic,....said that he would mostly start sleeping more and more. And that they could control the pain. He said the trajectory would be very level for a while but once a decline started, it would be a steep decline

Well, that's that. I am really tired and tense. Our daughter is flying in tonight and David's birthday is Tuesday. It's going to be a real bitter sweet party I'm giving.

barbn

don't give up
So sorry to hear of your news. I know how draining and depressing bad news can be. Please keep on fighting. Avastin is known to do good things. Keep the faith and try to be optimistic. You have a chance with Avastin, it's not like there is nothing left to go with.
You have to give it a try.
Thinking of you and your family.
Barb

Beckymarie

Avastin
My husband was on Avastin and the first round of treatments resulted in a significant decrease in the brain tumor. It did buy him time but the tumor did eventually find its way around the Avastin. I pray for your son and your family. This is a horrible disease.

connsteele

Beckymarie said:

Avastin
My husband was on Avastin and the first round of treatments resulted in a significant decrease in the brain tumor. It did buy him time but the tumor did eventually find its way around the Avastin. I pray for your son and your family. This is a horrible disease.

Beckymarie
Do you mind telling me how many months he was on the Avastin before it stopped working. I try not to think too much ahead, but I can't help it. Thanks for the reply and prayers.

connsteele

connsteele said:

Beckymarie
Do you mind telling me how many months he was on the Avastin before it stopped working. I try not to think too much ahead, but I can't help it. Thanks for the reply and prayers.

One more for Beckymarie
Also, what kind of tumor did he have? Did he also try Temodar and CCNU before going on the Avastin?

cindysuetoyou

treatment plan....
Dear connsteele,

I'm hoping that Avastin will help your David. And I hope it helps a lot. I hope it gives him a lot more time. All the choices that you mentioned--I was hoping that Avastin would be the one recommended by the tumor board. More surgery, etc didn't seem like very good options. They seemed like more pain, more heartache, more difficulty in recovering.....

I feel like the major goal in fighting brain cancer is to buy more time. I wish that the goal was to be cured, but we are obviously not near that yet. I feel like that's what we are doing with my David....buying more time. I hate that feeling, but I am grateful for each and every day that we have David with us.

I hate that you are at such a hard place in David's battle. I am praying for you and David every time I think about you guys, and I think of you often--many, many times each day. You are on my mind and heart.

Blessings, peace and strength to you and David,
Love, Cindy

alutiiqmom

university of California San Francisco
Hi:

UCSF Pediatric Neuro-oncology is going to do a case study on our daughter, Sarah. We had decided we wanted a second opinion, so we were looking at MD Anderson and UCSF. UCSF just wanted her records first and MD was an inperson visit. So we chose MD. We go to Houston in March. But, UCSF called and said they would do a case study on Sarah. The pediatric side does not have a fee, but I believe the adult side does have a fee to do that. In any event they have been very helpful. MD Anderson and UCSF have very similar treatments available, but UCSF is the hospital that is working on the vaciine fo GBM. You might try them. I hope that helps. My heart goes out to you and my prayers too.

love, Edna

Beckymarie

connsteele said:

One more for Beckymarie
Also, what kind of tumor did he have? Did he also try Temodar and CCNU before going on the Avastin?

GBM
My husband was diagnosed in March 2009 with a stage 4 glioblastoma, inoperable. He was given approx. 12 mos. Will immediately went the Temodar/radiation route which did not yield good results. I believe it was around July or August that we began the Avastin. He was given the Avastin every other week for 8 weeks and then an MRI. The first MRI showed a huge decrease in the tumor, the second showed a decrease but not as significant (I understand that you get the biggest bang for your buck with the first round). By the time the third MRI was done, new tumors started to show. One of the side effects of avastin is possible hemorraghes (sp?). My husband had a severe nose bleed that required a trip to the ER so this was also a factor that played into our stopping the avastin. We had hospice come in in May of 2010 and he passed in June 2010. We did not use CCNU. After the 3rd MRI our MD told me that Terry's tumor was so massive they did not expect him to make it six months. He fought this disease for 15 months.

pjohns

I read your comment and know
I read your comment and know how tiring the fight for health can be. Fighting health issues and bad news can take the wind out of your sails pretty quick. My advice, if you wonder about a second opinion, get one. You will always wonder if you don't. I will pray for you and your son. I wish I could offer a miracle answer. I can't, but God can and I will pray for you each time I think of you and your son.